FAQs for Registry Clinicians and Staff at Participating Sites

These FAQs only apply if your site has ethical and governance approval to be part of the ADNeT Registry.

REGISTRY PARTICIPATION FOR SITES

What type of clinics can join the ADNeT Registry?

Any private or public clinic where dementia and mild cognitive impairment (MCI) are diagnosed may join the ADNeT Registry.  Examples of clinics currently participating include:

  • both public and private multi-disciplinary memory and cognitive disorders clinics.
  • other specialised dementia and MCI diagnostic services.
  • aged care outreach services.
  • single-discipline medical practitioners (e.g. geriatricians, neurologists, and psychiatrists).

Can hospitals join the ADNeT Registry?

This depends.  Outpatient services based at either private or public hospitals can join the ADNeT Registry.  The inclusion of other services within the hospital, such as acute and subacute inpatient services, are currently being scoped.

What are the benefits of joining the ADNeT Registry?

There are several benefits of joining our Registry.

  • Your clinical service can participate in the benchmarking of your patient profile and clinical practices against other sites nationally.  Your site will receive a benchmarked report every six months, compared to national data. This report provides great insights into aspects of your patient profile such as:
  • patient demographics
  • types of diagnoses
  • clinical characteristics (e.g. cognitive and daily function)

as well as insights into aspects of quality of clinical practices, such as:

  • wait times for first appointments
  • completion of basic investigations
  • prescription and de-prescription of certain medications

The Registry also sends out patient and/or carer experience surveys. The summary data obtained through these surveys is included in your benchmarked reports.

  • Physicians such as geriatricians and neurologists who participate in the ADNeT Registry can use the time spent to meet new RACP 2023 CPD requirements of 25 hours minimum spent in audit / review of practice (Categories 2 and 3).
  • You can download your site’s data at any time to review, as well as to use it for ethically approved research or quality assurance programs.
  • The ADNeT Registry can facilitate recruitment of your patients into external research studies if this is of interest to you and your patients.
  • You can connect with others involved in dementia diagnosis and care through ADNeT annual forums and newsletters.
  • You are supported in keeping up to date with best clinical care practice, as the ADNeT data elements and clinical quality indicators are regularly reviewed and adjusted to reflect best practice.

What is involved in joining the Registry?

Your site will need governance approval from your organisation before joining the Registry. The Registry will prepare a governance application for your site and provide induction training and on-boarding support before data collection commences. 

PATIENT INCLUSION

I have a lot of patients coming to my clinic.  Do I need to enter all these patients into the ADNeT Registry?

No.  You only need to enter data for patients with a newly confirmed diagnosis of either dementia or MCI.  You do not need to  collect data for patients  who were already diagnosed with dementia, nor for those with other diagnoses, such as subjective cognitive impairment or a non-cognitive diagnosis.

The time for Registry data entry is once the diagnosis has been confirmed.

It is expected you will make efforts to enter data on all patients with a newly confirmed diagnosis. The ADNeT Registry can support your clinic to streamline data entry process.

I have just seen a patient for assessment of a likely diagnosis of dementia or MCI, but we need to complete some additional tests and/or see them again to be sure. Do I submit their data into the Registry now?

No. Data should only be submitted for a Registry patient after a diagnosis is confirmed.

A diagnosis is considered “confirmed” when the treating clinician:

  • is satisfied with the diagnosis, and
  • ideally, has also communicated that diagnosis to their patient and carer – recognising there may be certain situations in which communication of the diagnosis does not take place (e.g. patient has asked not to be informed).

However, at this point, it is possible to start entering data, either onto the paper form or directly into the online data entry platform, and save it for future submission.

Should I be entering data on all patients I see who have a new diagnosis of dementia or MCI into the ADNeT Registry?

Yes, ideally.  The ADNeT Registry is a clinical quality registry (CQR) that measures the quality of care.  For data to be meaningful for your site, and to facilitate benchmarking nationally, all eligible patients should be considered for ADNeT Registry inclusion.  If only a subset of your patients is included, the data entered cannot provide a true indication of your patient profile, or practices.

As CQRs mature, a process is often set up for “case ascertainment”, which means measuring at each site the proportion of patients entered against those that are eligible. 

If you are interested in learning more about CQRs, click here.

My patient isn’t interested in being part of a clinical trial or being contacted for any other research study.  Should I still include them in the ADNeT Registry?

Yes, they should still be included.  The ADNeT Registry is not a clinical trial.  It is a clinical quality registry designed to benchmark clinical processes and outcomes. This means that you can include a patient in the Registry regardless of whether they want to be part of a clinical trial.

For patients who are not interested in being involved in research studies, you should answer “no” for questions related to research participation.

Patients will not be contacted for involvement in any clinical trial or third party-led research study unless a site has indicated this is the patient’s preference.

The patient I have seen already has previously received a diagnosis of either dementia or MCI at another service. Should I be including this patient in the ADNeT Registry? 

This depends.  You can include the patient into the ADNeT Registry if:

  • the patient has been referred for a second opinion on a diagnosis of dementia or MCI, and a new diagnosis has been made by your clinic; or
  • a referral was made by a GP or hospital team to confirm a suspected diagnosis.

If a patient has previously received a diagnosis of MCI at your clinic and has now  transitioned to dementia, they can be added to the ADNeT Registry only if they had not been added previously.

POSTCARDS

When should I give my patient a postcard on the ADNET Registry?

You can give your patient a postcard on the ADNeT Registry after:

  • a diagnosis of dementia or MCI has been confirmed, and
  • the diagnosis has been discussed with the patient and/or person responsible.

This may be at the same appointment as the confirmation of a diagnosis, or at an early follow-up appointment.

Who do I give the ADNeT postcard to? The patient or their person responsible?

This depends.  People with dementia and MCI may have impairments in cognition that impact upon their abilities to make an informed decision about registry participation 

If a patient is determined to have the ability to make an informed participation decision (i.e., ability to participate in the opt-out approach),  and they know their diagnosis, they should receive the postcard. The patient’s contact details should be recorded for receipt of detailed Registry information .

The postcard should be handed to the person responsible IF the patient has demonstrated difficulties with reading and comprehension, or retention of new information, or in understanding their diagnosis. Furthermore, the person responsible should be the contact person, and have their contact details entered, to receive detailed Registry information. Where possible, both the patient and the person responsible should be made aware of the postcard and the Registry.

For more information about determining capacity to make an informed Registry participation decision, click here.

What should I say when I give a Registry postcard to my patients?

The following is suggested, but please adapt as you feel comfortable with:

“This clinic is participating in a quality assurance programme called the ADNeT Registry.  This means that for every patient we see who receives the same diagnosis that you have just received, we enter data about your diagnosis, and what we have done in clinic, into a secure database.  This is a way for us to monitor the quality of the service we provide.

You don’t need to do anything for this to happen.  This is a postcard about the ADNeT Registry.  In a few weeks, you will receive information in the postal mail with more information about this.  This includes information on what to do if you don’t want your data to be part of this.

You may also be sent some surveys to complete about your experience here today.  You don’t have to complete them if you don’t want to. But if you do, it is helpful for us to ensure we are doing the best job we can.

Is this okay with you?”

For further information on our Registry postcard, click here.

Are there situations in which I shouldn’t / don’t need to give my patient a postcard?

Yes!  Do not give a postcard if:

  • the patient has impaired decision-making abilities with respect to opt-out consent and the person responsible identified has not been informed of the diagnosis.

In the above settings, we have ethical approval for you to enter and submit data for these patients under a waiver of consent.  This approval has been granted because the primary purpose of the ADNeT Registry is monitoring quality and the above group have the highest risk of poor outcomes.

In these instances patient contact information will not be collected and these patients will not receive any further contact from the ADNeT Registry.

Where do we get more Registry postcards from?

If you require more postcards, please email adnet.registry@monash.edu.

An electronic version of the Registry postcard can be accessed here (should you wish to provide to patients seen via telehealth, for instance).

Help! I forgot to hand out the postcard or mention the ADNeT Registry.  What should I do?

This is not an uncommon occurrence in busy clinical practices.

The ANDeT Registry has a letter template that your site can send either via email or post together with the postcard for your patient.  You can access the letter template here.

Alternatively, your site may choose to contact the patient by phone directly to inform about the ADNeT Registry.  You may also discuss the ADNeT Registry at the next follow-up appointment if it is not too far away (remember to make a note in the clinical record to prompt for next time!).

How can I support my team members and clinicians to remember to mention the ADNeT Registry and hand out the postcard?

This is a common issue for busy clinicians, and clinics with rotating doctors.  You may wish to consider the following:

  • ask your admin staff to include the ADNeT Registry postcard along with the patient paper documents.
  • keep a batch of ADNeT Registry postcards in clinic rooms.
  • orient new staff to the ADNeT Registry (the ADNeT Registry team can also help you with this)
  • call 1800 314 421, or email adnet.registry@monash.edu.
  • flag ADNeT Registry participation for each new patient discussed in case consensus meetings (if possible).

CONSENT

Do I need to obtain consent from my patients to be part of the ADNeT Registry?

No.  You do not need to obtain consent because the ADNeT Registry team will contact your patients using an opt-out recruitment model.  After you submit data, the team will send your patients (and/or their persons responsible) information about the ADNeT Registry including information on how to withdraw their data if so desired.  Information that can be sent out to the patient can be found here.

However, we ask that clinicians advise patients about the ADNeT Registry by handing out a postcard at the time of diagnosis.  You may also wish to display a poster in your clinic that states the clinic participates in the ADNeT Registry.

Why does the ADNeT Registry use an opt-out recruitment model?

The ADNeT Registry is a clinical quality registry (CQR) which is primarily aimed at measuring the quality of care.  The Australian Commission for Safety and Quality in Healthcare (ACSQHC) recommends an opt out approach for CQRs in Australia because it maximises coverage and minimises selection bias, thus increasing the validity and generalisability of data collected.

My patient and/or their person responsible does not speak English well, and may not understand the information that the ADNeT Registry sends out.  Is the information available in any other language?

Yes.  The ADNeT Registry information (e.g. invitation letter, participant information sheet, and withdrawal form) is also available in Arabic, Chinese, Greek, and Italian.  Both English and translated versions will be sent if the patient/person responsible speaks one of these languages.

How do I decide whether my patient has capacity to opt-out of the Registry?

People with dementia and MCI may have impairments in cognition that impact upon their abilities to make an informed decision about registry participation.  This may include their ability to:

  • read the information about the ADNeT Registry,
  • understand this information,
  • retain the information in order to decide whether to participate Communicate their wishes,
  • initiate efforts to withdraw, if this would be their preference (e.g. phone, email or mail back a withdrawal form).

We recommend clinicians make decision based on the clinical assessments conducted during the work-up.

For more information, click here.

DATA COLLECTION AND ENTRY

Does it have to be a doctor who completes data entry for the ADNeT Registry?

No.  Many doctors do complete all the data entry themselves, and some find it helpful as a prompt to aspects of clinical assessment.  Many doctors find completing the paper form the quickest, especially if completing shortly after seeing the patient.  Another staff member, including an administrative staff member, may then enter this data from the paper form into the online database.  In some instances, these paper forms can be transferred securely to the ADNeT Registry for Registry staff to enter.

In some clinics, they may have arrangements for a staff member who is not a doctor to fill in the paper form or enter data directly into the online database, based on information from the clinical records.

However, only a doctor can make the determination about capacity and has the ultimate responsibility of informing the patient of the diagnosis and recording this.

It is therefore recommended that doctors include a statement in their medical record about capacity that is specific to the participation in the ADNeT Registry and whether the patient (or person responsible) has been informed of the diagnosis.

Please contact the ADNeT Registry (adnet.registry@monash.edu) if setting up a system for Registry staff to enter data from paper forms would be best for your service.

I do not have some of the information required for the completion of the form. What should I do?

For data variables that are unknown, simply check the “Unknown” option rather than leaving it blank. 

The Registry regularly reviews data that is collected. If some elements are frequently missing, it suggests that these data may not be feasible for the Registry to collect in the longer term.

DIAGNOSIS QUESTIONS

My patient likely has a mixture of pathologies that cause their dementia.  What subtype of dementia should I select?

Please select all subtypes that apply.

I think my patient has LATE, or CTE as a cause of their dementia.  What diagnosis should I select for these?

Please select “Other Dementia (incl. LATE, CTE)”.

My patient likely has dementia in part related to alcohol abuse. What diagnosis should I select?

Please select “Dementia due to psychoactive substance use (incl. ETOH)” and any other subtypes of dementia that apply.

COGNITIVE TESTS

I completed an ACE-III or ACE-R.  Can this score be recorded?

Yes.  The new dataset will allow recording of an ACE-III score, if an MMSE score has also been provided.

The scores for the MMSE, MOCA, RUDAS and KICA can still be recorded.

I did a cognitive test that is not the MMSE, MOCA, RUDAS, KICA (or ACE-III).  Can this score also be recorded?

No.  The purpose of the ADNeT Registry is to collect nationally representative data, so only the above cognitive tests can have the score entered.

You can indicate other tests were performed by selecting yes for the question “Other cognitive tests were completed”.

Can the scores of tests for neuropsychiatric symptoms, such as the NPI, or Geriatric Depression Scale, be recorded?

No.  The ADNeT Registry does not have the capacity to record these scores.  Clinical sites vary in their use of differing scales for assessment of neuropsychiatric symptoms.  Sites are encouraged to use their own clinical data from these scales to complete the questions about neuropsychiatric symptoms on the revised data form.

INVESTIGATIONS

I have made a diagnosis, and communicated this diagnosis to the patient and/or their person responsible.  I am now arranging for additional investigations (such as biomarkers, or further neuroimaging).  Should I indicate on the Registry form that these investigations have been completed?

No.  If you are ready to submit your Registry data, and the investigations have not been performed, do not indicate that they have been completed.

If the purpose of performing these investigations was to better characterise diagnosis or subtype, it may be better to submit the patient’s data after these investigations are completed.